Chronic Lung Disease

Ace1599 · April 2009

We found out today that our Dr. is almost certain Dawson is going to end up with CDL. Our hospital gives out this book that is a parent of preemies and what to expect and she referred me to that for more info and then wants to meet again in a few days to discuss and have me ask questions when I get a better grasp of what that means. Everything that I have read though discusses it in regards to what that means for our baby while he is still in the NICU...

If you have had experience with this, was this something your son/daughter grew out of? What is your experience with CDL and what did it mean for you baby as they are now growing older?

april062604 · April 2009

i don't have any experience, but have a friend from the nicu who's one twin has chronic lung disease. ?it's been a longer road for his than for his twin, but he's happy and healthy. ?i'll keep you and dawson in my prayers.

sweater · April 2009

My smaller twin has CLD, and it has kept him on 02 for about 6 months, then just at night. He will be testing to get rid of it in the next two weeks. Other than that, it just makes a baby able to contract respitory issues. We haven't had to deal with that thankfully.

good luck!?

mcdev · April 2009

My youngest has CLD. ?What it means for her is that she came home on O2. ?At first it was 24 hrs a day, then it was just at night as well as a home pulse ox. ?She is 11 months old and has been off her O2 for almost a month but we monitor her with the pulse ox. ?She sees a pulmonary dr at CHOP every couple of months. ?They had prepared us for a winter full of chest colds, nebulizers, and hospital stays, but we had none of that. ?Keira had several colds this winter, but none went to her chest. ?They said she would most definitely outgrow her CLD because the lungs grow at such a tremendous rate during the first years of life although she may have asthma when she gets older. ?We'll see!

2BWEDN2007 · April 2009

I have a 24 weeker who has chronic lung disease. The "good" thing about it is they eventually outgrow it. You grow new lung tissue up until the age of 6, but most babies outgrow it by 2-3 when they have caught up with their peers.

We were able to wean DS off the oxygen prior to coming home (116 in the NICU) and he has done fine ever since. We were very cautious about hand washing, santizing, etc. when he came home because of RSV and colds during the Winter season, but he hasn't been sick once since coming home (he is now almost 13 months old and completely healthy!).

Getting sick with CLD is probably the most stressful factor because one little cold can send them to the hospital and back on a ventilator, but luckily your DS was a micro-preemie and his GA was so young that he will automatically qualify for the Synagis shots for RSV this Winter so you should be good. Just be careful about who holds him, don't let sick people visit, etc.

lstaylor73 · April 2009

One of my twins Cameron was diagnosed with CDL and came home on 1/4 litre oxygen but was weaned off by the time he was 5 mos old. CDL does not need to be a permanent condition and does not mean that he will have any breathing problems as an adult like asthma or emphysema. He was given a 100% clean bill of health once weaned off the oxygen. Let me know if you have any questions... My email is Taylo2Babies at Gmail.com

AviatorJJ · April 2009

Rowen has asthma from it. so the first year he had breathing treatments daily. but now he has an inhaler only as needed.

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